Archive for May, 2010

Memorial Day Bash, Parades and Teaching!

We had a 2 day long Memorial Weekend barbecue. It was nice to see old friends, make new ones, and just have a good day in general. I made sure to pre-treat Mariella before the fire…but she DID wake up tight and icky the next day.

One of my friends noticed the bluish hue to her nails, so at least I’m no longer the only one in the world who has seen it. I didn’t grab her O2 level…because, I go into “fix the blue” mode. I know, I know…it’s WHY we have the O2 monitor…I promise to be better next time. I think I need to role play or something, so I don’t brain fart what I’m supposed to do.
Today, the girls walked in our town’s Memorial Day Parade. They are both Girl Scouts, so they walked with their troop. I was GOING to bring the stroller…BUT, Mariella is SIX, and really too old to be riding in the stroller. However, the leader brought a wagon. Mariella did get tight, and asked for a treatment. (it was very warm, and starting to get humid.) So she was able to ride in the wagon for a few minutes while she did her treatment. She actually probably could have walked and nebbed..but since we had access to the wagon…we used it.
I had approached the leader last week about running a meeting to work on an asthma awareness badge that I had found on the Girl Scout website. She was ok with it, and did run it by the parents to see if they objected. Nobody did. One of her fellow Daisy scouts was a little freaked out and worried about Mariella when she was doing her neb, and we explained that sometimes Mariella’s lungs didn’t work the way they were supposed to, and that the machine put medicine in her lungs to help her…so I think a meeting on awareness is very appropriate. My thinking behind it was that if she is in the troop with them for any length of time, the chances are they will see her needing her puffer or a treatment. They need to know that she is going to be ok, and maybe more importantly, she can’t make THEM sick.
I’ve printed off all my materials, and I’m going to look through them. I’m going to bring her nebulizer machine and her O2 monitor and let them look at them, check their O2…I’ll bring my stethoscope, and show them how I listen to her lungs, I’ll bring her puffers to show them her medicine. I’ve already asked Mariella if it’s ok for me to talk about her.
I’ll let you know how it goes when we’re all done. I’m kind of excited about it.


Overnight musings….

So, I’ve been rolling the cardiology appointment around in my mind. I’m like that…I process things over and over again. I’m fully satisfied that Mariella has no cardiac issues. That is not on the table, and totally off my mind. I didn’t realize how relieved that it would make me feel, since I didn’t consciously think there was an issue.

In the conversation about Mariella’s history, a funny exchange happened. The doctor was telling me what he had read, and how he had understood it…and said “I’m missing something about the belly…I read something, and I can’t remember what it is.” I replied, “she has some gastroparesis…but Dr. Goode doesn’t call it that, Dr. Duda does…but not Dr. Goode.” He looked a little surprised, and said, “Dr. Goode DOES call it that….that’s exactly what I was forgetting.”
So it makes me wonder…why did Dr. Goode tell me it wasn’t gastroparesis. Dr. Duda told me her percentage…I can’t remember off the top of my head what it was…but it was definitely slower than normal, so I call it that. Was she just trying not to worry me? I don’t know. We DID talk about the possibility of treating her slow tummy…and we both decided that at the time, it wasn’t necessary, so she does agree that it’s slower than normal. I always thought that perhaps as a gastro, she had a different definition of “gastroparesis” that maybe it had to be slower than what Mariella’s tummy is to make the actual diagnosis.
Also, the cardiologist was taking about her tummy and lungs being connected. Dr. Goode sees no evidence of such, BUT…most of Mariella’s tests are inconclusive. They show that there is damage to her lungs, they show damage to her esophagus, they show a slow tummy…but the problem is that we haven’t found an effective method to treat them. (as much as I would LOVE a test to say “this is the problem” and have a doctor say “I know how to fix that” I’m appreciative that the tests show SOMETHING…otherwise, I’m pretty sure I would have been arrested for M√ľnchhausen by Proxy. I know I FEEL crazy half the time)
As I type, I think I can confidently say that Mariella has turned the corner. She has a little more energy. She isn’t using her accessory muscles to help her breathe anymore. (it was quite obvious yesterday, the doctor mentioned it.) She isn’t breathing between words, and giggling isn’t sending her into gasping breaths or uncontrolled coughing. (and Mariella is a giggler…the smallest thing in the world sets her off) When she SINGS, she is still gasping a bit…which she doesn’t normally…but I’ll wager that by tomorrow, she’ll be a whole lot clearer. I’m not hearing the grossness in her lungs, and she’s bringing up the more normal amount when she uses the acapella. (I know…there probably shouldn’t be anything when she does it…but there is) I think I’ll let her graduate down to 2 times a day again.
This weekend is Rob’s big Memorial Day Barbeque 2 day event. (oh, yay…/sarcasm) So most of the day will be outside. I’m hoping it’s not going to be gross out. Should I pretreat Mariella before we light the firepit?

Cardiology update

Well…Mariella has a heart. A fully normally functioning heart. We started the appointment with an EKG…and that had all the appropriate spikes and valleys and other things. Then, a doctor came in and spoke with us. I was SUPER impressed that he had read Mariella’s 4 inch thick chart. He did a basic exam…then his supervisor (the “real” cardiologist) came in. (I believe he was a doctor who was changing specialties.) I also really, really liked the real cardiologist. He was thorough, he took the time to talk to me, and answered all my questions. He had also read the chart, and was very well versed on Mariella’s journey. He also did a very thorough physical exam…listening to all the major pulse points on the body.

He was very convinced that there was no issue at all, but he also had Mariella have an echocardiogram. He was funny. He said, “It’s not for me…I don’t think the blue period is cardiac. It’s not even for YOU, since you don’t think the blue periods are cardiac…but if I do a cardiology exam without the echo…Dr. Duda and Dr. Goode are going to ask…’where’s the echo?'”
So, off to the echo room we went. There was a really cool mural in that room, two walls worth, and within the mural, there were hidden pictures. Mariella and I had a good time trying to find them, and then it was time for the ultrasound. She took about a gazillion pictures, we got to hear her heartbeat. (kind of cool, since the last time I heard her heartbeat on an ultrasound, she was in utero. It’s actually the same whoosh whoosh sound, but slightly slower.) She also printed out two of the images for Mariella to bring home. I don’t know how to work the scanner, but as soon as I figure it out, I’ll scan them.
Our appointment was at ten of eleven…the doc was running about 10 minutes late, and we got out of there just after 12:30…so it was a nice long appointment. No real answers, but we really weren’t expecting any. If we found cardiac issues, it would have ADDED an issue, not answered any questions, so I went into this appointment praying for it to show nothing.
Afterward, Mariella and I had a lunch date, and went to Target for her prize. Yes, I reward my child for good, compliant, cooperative behavior at the doctors office. Sometimes, she gets BIG prizes, other times, she gets small prizes. However, when you get told by 5 or 6 different people how well behaved your child is, and how good she does at the doctors, I think it deserves a “Littlest Pet Shop” set. AND, even better…she got a day off of school.
On the respiratory front, the pred seems to be beginning to work it’s magic. She’s still coughing, and complaining of feeling tight…but she’s not as junky. She hasn’t graduated to doing the acapella twice a day, she still has to do it 3 times a day. If on Tuesday, she’s still feeling poorly, or if she goes south over the weekend, I’ll get her squeezed in. (if I’m really unhappy on Monday, I might be able to get the pedi to order a chest series. I won’t ask them to see her, since they can’t ever hear anything anyway.) The pred is making her super sensitive…so we’re fielding all sorts of tears and stuff, for any and all slights, real and imagined…but it could be rages…so I’ll go with supersensitive, crybaby girl.
So, that’s all from here. I have photographic evidence that my youngest has a heart. Along with the MRI from when she was 2 that shows she has a brain…we’re all good.

fly by posting….

Mariella had to start pred…we followed sick plan, and she didn’t get better…her lungs sound like they are full of junk…acapella brings all that junk UP. Her cough is gross.

Cardiology tomorrow. I have no idea how long this thing will take…it could be quick…”nope, nothing going on here” or it could be a long, thorough appointment…(that ends with “nope, nothing going on here)
I’ve already told everyone who needs to know that she probably won’t be at school. I can’t WAIT to see the total tally of absences and tardies on the end of the year report card.

So, we all have our challenges, right….

This blog is mainly about Mariella and our challenges with her asthma and her tummy “issue”. I do have an older daughter as well. I’d love to say that her life goes along swimmingly, with no problems…but I’d be a liar if I did. We’re in a nice, stable patch with her right now…but I thought I’d take the opportunity to tell a little bit of her story.

Abigayle was born in 2000. She was a month early, due to the fact that I was toxemic. I basically skipped right over pre-eclampsia and went straight to the doctor saying, “I’m surprised you’re not seizing already.” Due to my Gestational Diabetes, she was still a big baby (over 7 lbs) but she lost almost 2 lbs in the hospital before she came home. She behaved in the manner of most preemies. She was sleepy, she didn’t feed well, and she was cold all the time, but we got through it.
She was a good baby. Other than her little blip of RSV, where she spent 12 days in PICU, she was a healthy baby. She still has reactive airways, but it’s manageable.
Abby’s struggles are a little harder to define. At about 18 months old, we started realizing that her tantrums were coming far more often than a “typical child” By the time she was three, she was having tantrums upwards of 20 times a day. Some would pass relatively quickly, others lasted for hours. They often were about things as minor as the fact that I gave her the wrong purple cup…even if the purple cup I gave her was IDENTICAL to the cup she wanted.
She also stopped sleeping. She would be messing around her room until 2 or 3 in the morning, and then be up for the day at 6AM. We were all exhausted. I finally brought her to the doctor and asked, no, BEGGED them to fix her. She started on Clonidine at that point, and it was wonderful…for the first time in a long time, she was sleeping. It didn’t help the tantrums, or the defiance, or the other behavior issues…but at least I wasn’t so sleep deprived that it was IMPOSSIBLE to deal with them. It was still DIFFICULT to deal with them, but not impossible.
We started to just give in to whatever she wanted…anything to avoid a tantrum, or a rage. She went from being a sweet, cuddly, loving little girl to a child who was prickly, angry, and distant. We began seeing a therapist, who was basically useless. She would send us out to the waiting room, and then not tell us what was happening in the session. I’m all about confidentiality in therapy…for teens and adults…NOT a three year old. We left that therapist, and muddled through for a while, until we began seeing another therapist. This was a behavioral psychologist, and the therapy was as much for me as it was for her. He taught me tools to deal with the rages and the anger and the defiance. He also realized that she was beyond his scope, and that she most likely needed medication. A scary, scary thought when your child isn’t yet 5.
He helped us find a child psychiatrist who would probably be willing to prescribe medication for such a young child. We met with her, and we talked about all the possibilities. In young children, many of the psychiatric illnesses look the same. It was terrifying to hear things like “pediatric bipolar disorder” and “very early onset schizophrenia” along with the more “typical” diagnosis, like Oppositional Defiance Disorder and depression, and Autism.
Because I was diagnosed with depression in college, and when going over my history, the doctor mentioned that I probably should have been medicated when I was two…and the fact that Abby is a carbon copy of me at that age…we were pretty confident that we were looking at depression and anxiety. We made the decision to treat her with Zoloft. Within a month, things looked SO much better. She was still a challenge, and she still had rages and tantrums, but the severity and the sheer number of them went down. (It’s important to note that Abby’s first words were “Hi, Dada” into a pretend phone, at just over 6 months of age. Communication, or lack there of were never at the root of her tantrums…though, lack of ability to communicate are the typical cause of toddler tantrums)
In those early days, we still had real, scary things to deal with. When Mariella was about two weeks old, I came out of the bathroom to find Abby with a pillow over the baby’s face. When I asked her what she was doing, she looked at me, and said, “I’m trying to kill the baby.” There was also the time when she asked me something, and my answer was “not right now…in couple minutes” and she looked at me and said “I’m so sad with you, I’m going to cut myself into a million pieces.” So, I didn’t go to the bathroom alone for almost 2 years, and all the knives, including butter knives, were stored on top of the refrigerator.
Things a so much better now. I always know when she’s due for a med adjustment…she gets more irritable, more defiant, and rages more easily. These times are fewer and farther between, as she isn’t growing quite as fast as she was as a toddler and preschooler.
She was also diagnosed with ADHD at about this time, but we chose not to treat the ADHD at that time. It was hard enough to make the decision to start an antidepressant, I just couldn’t start a stimulant at the same time. She did OK in preschool, she had a horrible teacher in kindergarten, but first and second grade were also pretty good. In third grade, she started to really have trouble, so we made the decision to begin ADDerall, and it’s one of those times when I feel like kicking myself, and start waiting for the “Bad Mom of the Year” award to be brought to my house. She is doing so well on the new med.
We still see some ‘red flag’ behaviors, and I still wouldn’t be surprised if at sometime Abby is given a spectrum diagnosis. If she does fall on the spectrum, she is high on the spectrum, and is functioning well enough. She has a plethora of sensory integration issues, tactile defensiveness, and other such things. She struggles socially. Her psychiatrist said those things can also be attributed to the fact that she is gifted, so really who knows. A diagnosis won’t change anything…and we won’t persue it, unless we have to.
She thrives in school. She craves the structure that school gives to her. She flounders at home on weekends and vacations. I try to structure our day, but it just isn’t possible to do so to the extent that she would like. It makes it difficult sometimes, be we handle it.
Abby comes by many of her issues honestly. As I said, I was diagnosed with depression when I was in college. I was diagnosed with ADHD at the same time. There is a diagnostic tool call the Adult Connor’s Scale, and I answered every question appropriately for ADHD. The doctor looked at me and said…”you graduated from high school….REALLY?…HOW?” According to him, I was one of the most severely affected adults with ADHD that he had ever met. I have always opted not to be treated, because, well…”I’ve functioned well enough so far.” Though, according to Abby’s psychiatrist, I’m not functioning “well enough.” So I went to the doctor yesterday, and will be starting ADDerall tomorrow morning. We decided that it works so well for Abby, and she is so like me, that it will probably work well for me. I’m hopeful, and I’ll let you know how it all goes.

Dance Recital Day

In the midst of all that is NOT normal in our lives, the girls do something that is VERY normal. They each take a dance class. Abby takes tap, and Mariella took a ballet/tap combo class this year. So, after a season of schlepping to the studio two days a week, today was recital day.
I’m beyond thrilled at how the studio chose to handle the recital this year. In years past, all the girls who were not in a combo class (combo classes are the very youngest of the dancers) danced in two shows. The first year Abby was old enough to have to do that, it was no big deal, the shows were on two different days, and we just had family out on the day of the show they both danced in. Last year, however, the two shows were on the same day, and each show was pushing 3 hours…with barely an hour between the shows in which I had to try and shove a Wendy’s burger down Abby’s gullet. Apparently, I was not the only parent who complained about the debacle, because they didn’t have the girls dancing in two shows this year (because, really…why was it necessary?)
They did wonderfully. Abby took a tap class, and they danced to the Happy Day’s theme song.
Mariella danced to “A Tea Party Ballet” Her little class sang along as they danced. It was totally adorable. She did great. I was a little concerned about her breathing, because I don’t get to hang out back stage with them…and she asked me to bring her neb, but I told the adult in charge of them where we were sitting, and said if she asks for it, to come and get me. I had also dosed her before we left, and didn’t think she would have too much trouble. She didn’t until we got in the car…but I think it had a lot to do with the jumping up and down and general crazyness of the finale.
Both sets of grandparents were able to come, and we went out for delicious German food afterward. We got home, and the girls did some crafts with Grammy, and watched Empire Strikes Back with daddy…then it was time for treatments and bed.
As much as we all love dance, I think the girls are as relieved as I am when the season ends. There is time to hang out, and not rush these couple days a week now. Abby will be taking Ballet next year, and Mariella is taking “whatever Mr. David teaches” He is her favorite teacher, and she wasn’t able to be in his class this year…so she is looking forward to being in his class again.

An apology in advance for a whiny post

Now that we’ve got the O2 monitor, and I’ve got a spreadsheet of her levels and rescue, either by MDI or nebulizer, I was able to see that Mariella has needed 7 albuterol or Xop doses in 7 days. Not one a day, so there have been days that she needs more than one.

So, now that I have it in black and white…it’s a bit easier to say…”wow, it’s time to implement the sick plan…for some reason, her lungs are PISSED.” It’s also just HARDER to see it in black and white. I know I “forget” how many treatments we really do…when we do them so often.
So, my spreadsheet has her pre and post treatment (if needed) O2 levels, as well as a notation as to why she needed a treatment. I am basically giving a rescue treatment for any O2 level of 93% or below. It’s not the protocol I’ve been given…her doc didn’t really give me one…She’s never really had low O2 in the office when we’re there. Even when she was completely occluded, she was satting at 99 or 100%. I don’t think he really expected to see low readings. We see nice high ones too…98, 99, 100%. Sometimes, she’s got a nice high O2 reading, but she’s feeling short of breath, or her chest hurts, or she’s coughing…and those get a notation. I always check her O2 after a treatment as well.
We started “sick plan” tonight. Her cough has gotten steadily worse since Tuesday, when she ended up in the nurses office for her Xop. At that point, she was just tight, according to the nurse. She was not coughing over night, but did start as soon as she woke up, and asked for a treatment on Wednesday. By today, her cough is junky and gross…she is bringing up grossness after her acapella. (which of course is good, that’s the point of airway clearance) It’s not colored…just gross. I don’t want to, but I might just keep her home tomorrow. She’s coughing in her sleep, which means she won’t be well rested, and they already complain about her distractedness…which will be worse if she’s tired.
Tomorrow we’re heading to the financial counselor at the hospital, to see what Mariella qualifies for, regarding MassHealth. It’s just so expensive keeping her in medication.
I’ll also be calling her pulmonologist, to let him know we’ve started sick plan, and to see if he thinks he needs to see her. He usually does not, though…he trusts me to administer the medication, and to call if she goes south.